Feasibility of Virtual Visits for Parkinson Disease [ Time Frame: One year ] [ Designated as safety issue: No ]

Feasibility of virtual visits will be determined by the number of participants who complete at least one virtual visit successfully.

Efficacy of care provided via virtual visits [ Time Frame: One year ] [ Designated as safety issue: No ]

Assessed as the change in quality of life, measured by the Parkinson Disease Questionnaire 39 (PDQ-39).

Secondary Outcome Measures:

Overall Quality of Life [ Time Frame: One year ] [ Designated as safety issue: No ]

We will measure the change in overall quality of life reported from baseline to the end of the study using the EuroQoL 5D-5L.

Patient Global Impression of Change [ Time Frame: One year ] [ Designated as safety issue: No ]

At the conclusion of the study, participants will be asked to describe how they feel their health has changed since the beginning of the study.

Cognition [ Time Frame: One year ] [ Designated as safety issue: No ]

We will assess changes in cognition from baseline to the end of the study using the Montreal Cognitive Assessment (MoCA), administered remotely.

Parkinson disease severity [ Time Frame: One year ] [ Designated as safety issue: No ]

Parkinson disease clinical characteristics will be assessed by a physician independent rater, blinded to treatment group, at baseline and at the conclusion of the study, using the Movement Disorder Society Unified Parkinson Disease Rating Scale (MDS-UPDRS).

Quality of Care [ Time Frame: One year ] [ Designated as safety issue: No ]

We will assess change in the perceived quality of care using the Patient Assessment of Chronic Illness Care (PACIC).

Value to patients and care partners [ Time Frame: One year ] [ Designated as safety issue: No ]

We will assess value to patients and caregivers using questions about time and travel to Parkinson disease appointments, as well as healthcare resource utilization (including hospitalizations and other visits).

Care partner burden [ Time Frame: One year ] [ Designated as safety issue: No ]

Measured as the change in the Multidimensional Caregiver Strain Index (MCSI).

Participants with Parkinson disease will receive educational materials from the National Parkinson Foundation, complete a baseline assessment survey and virtual visit with a physician independent rater, then continue with their usual care in their communities for the duration of the study. After 12 months, they will have another virtual study assessment with an independent rater, after which they will receive a free, one-time virtual consultation with a Parkinson disease specialist in their state.

Experimental: Virtual Visits and Educational Materials

Participants with Parkinson disease randomized to the virtual visit intervention will receive educational materials from the National Parkinson Foundation, complete a baseline assessment and virtual study assessment with a physician independent rater, and then receive four virtual care visits with a Parkinson disease specialist in their state. Specialists will provide recommendations for care to participants and their designated local health care provider. At 12 months, these individuals will again be assessed by the independent rater, who will be blind to treatment assignment.

Other: Virtual Visits

Virtual visits will be completed using HIPAA-compliant video conferencing software from SBR Health and Vidyo, designed specifically for use in the healthcare industry. The software is available for Windows and Mac OS, as well as iOS devices (iPad and iPhone).

Other Names:

Telemedicine

Teleneurology

Video call

Video conferencing

No Intervention: Care partners

Care partners will be enrolled with the participants for whom they care. Care partners will complete a survey at baseline and at the end of the study, including assessments of time and travel for assisting with Parkinson disease visits and the Multidimensional Caregiver Strain Index (MCSI).

Detailed Description:

Connect.Parkinson is a national study examining the feasibility and effectiveness of using video calls to bring expert Parkinson disease care directly into patients' homes. Currently, access to care for Parkinson disease is limited by distance, disability, and the distribution of doctors. Approximately 200 individuals with Parkinson disease (who due to distance, disability, disparity, or doctor distribution have limited access to care) will be randomized to one of two arms in this comparative effectiveness study. The first (control) arm will be the individual's "usual care" supplemented by educational materials on their condition. This usual care may include care from a generalist, care from a neurologist, or in-person care from a Parkinson specialist. The care received by the control group will vary but will be an accurate reflection of usual care in this country. The second (intervention) arm will be usual care supplemented by educational materials and care from a Parkinson disease specialist delivered via web-based video conferencing into the patient's home. The participants will also be asked with they have a primary care partner, and care partners will be invited to enroll, for a total of approximately 400 participants.

Eligibility

Ages Eligible for Study:

30 Years and older (Adult, Senior)

Genders Eligible for Study:

Both

Accepts Healthy Volunteers:

Yes

Criteria

Inclusion Criteria:

Individuals with clinically diagnosed Idiopathic Parkinson disease in the judgment of the independent rater

No better alternative explanation for the parkinsonism

Access to a non-public, internet-enabled device (e.g., computer, tablet computer, smart phone) that has the capacity for web-based video conferencing

Be physically located at time visits are conducted in a state where the participating physician is licensed to practice medicine

Have a local care provider that the study team can contact

Live at home, in a senior housing complex, or assisted living facility

Be fluent in English (all participating states) or Spanish (participants in Florida and Massachusetts only)

Willing and able to provide informed consent

Care partner (if applicable) must be able and willing to provide informed consent to participate if he or she so chooses.

Exclusion Criteria:

Currently hospitalized

Condition (e.g., prominent psychosis) that precludes study participation as identified by the medical professional (site investigator or nurse).

Participation in another telemedicine study.

Contacts and Locations

Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study.
To learn more about this study, you or your doctor may contact the study research staff using the Contacts provided below.
For general information, see Learn About Clinical Studies.

Please refer to this study by its ClinicalTrials.gov identifier: NCT02038959